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J-Pouch ForumsGeneral Discussion
stress and my jpouch
N NJK
mgmt10 Stress definately effects my j pouch among other body parts too. I started an exercise routine about 4 months ago. I simply walk on the treadmill or do the elliptical machine (I joined a cheap gym) for an hour every day. I feel better, look better and it helps alleviate stress a lot. [ more ]
skn69 NJK, Stress effects everyones' intestinal tract...even people without pouches...it is biological...fight or flight reflex. People with 'normal' guts are programmed to empty the intestines out before facing aggression, stress or danger...so it is normal that when we feel stress our guts turn to water, we get gassy, things boil in there... Depending on what is going on mine either liquifys (good thing for me), runs like crazy (feels like pouchitis) or dries out (I dehydrate). Goes strait back... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohns, Remicade, and pouch excision
L LisaT
Lynne2 I’ve been on Remicade for about a year for chronic pouchitis that became antibiotic-resistant. No clear diagnosis of UC vs CD, but the docs say it doesn’t matter at this point since the treatment options they recommend are the same: Remicade and, if that doesn’t work, I will opt for perm ileo and total removal of pouch. The Remicade works fairly well, but has not been the silver bullet I was hoping it would be. Nonetheless, my symptoms did start improving right away, even though I was told... [ more ]
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J-Pouch ForumsGeneral Discussion
how do you pass gas?
G Guest
CeeeeCeeee Yes, Tom! My feelings exactly! Whoosh! [ more ]
Guest ceeeeceeee! i literally just said the same thing to my wife. it kinda ejects the stool out. a blow out if you will [ more ]
Guest ceeeeceeee! i literally just said the same thing to my wife. it kinda ejects the stool out. a blow out if you will [ more ]
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J-Pouch ForumsGeneral Discussion
2nd day after takedown
S SandrineV
Guest i started going the next day but yes i found it to be way harder that the first 2 surgeries and my ribs hurt too on the right side and my stoma was bothersome but it gets better. be prepared for the itchies as it heals though. some have it easy after but im having some discomfort at certain times during the night. i am only 3 weeks out though. i was hopeful id get lucky or that those that warned me were over reacting. it can feel intolerable but really its not. dont let your psyche get in... [ more ]
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J-Pouch ForumsGeneral Discussion
Need Colorectal surgeon in Memphis, TN
S Subzeromambo
RWNC I had mine done in Memphis by Justin Monroe and I have been very happy with my pouch. He does surgeries at Baptist. There is also Stephen W. Behrman at UT Group who also does surgeries at Baptist. My doctor initially recommended him but I didn't care for his support staff so I asked for a second referral. I did talk to a couple of his patients though who absolutely loved him so maybe my experience was just different. There is also a good ostomy nurse at Baptist who was very helpful with... [ more ]
BrianG73 There's a great team of CR surgeons in St. Louis who have great j-pouch experience. I had mine done in 2010 by Dr. Elisa Birnbaum who is with Washington University at Barnes Jewish Hospital. She's been doing j-pouches almost since they were invented 25 years ago. [ more ]
Former Member I am in Memphis. I have't found a surgeon here that has done a J-pouch. I will probably go to the Mayo Clinic. [ more ]
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J-Pouch ForumsGeneral Discussion
Bad news, good news....maybe
A akteacher
akteacher I did email Dr. Shen & did receive an answer late last night. He went over the findings from the pouchoscopy again & did send the same email to Dr. Remzi. He did clarify where the fistulas are....1 is to my abdominal wall, 1 is at the tip of the jpouch & 1 to the vagina (not bladder as I stated above). I also emailed Dr. Remzi's nurse practitioner, Vicki, & she responded as well! She set up an appointment for me to see Dr. Remzi on Monday. I guess I panicked before & am... [ more ]
Pouchomarx i have a sinus tract that Shen has done the "kneedle/knife" procedure on to try and fix this issue twice. 1st 2 did not work and have a 3rd scheduled in a few weeks, but they are very expensive and does not even know if they will work. He also said if he cant fix it that he would suggest surgery again and possibly lose the pouch. I had an MRI and other test since him finding this sinus, and consulted with my surgeon at CC and he is confident from this MRI that this is same area i had my leak... [ more ]
jeane I am sorry I did not see the original thread. My surgeon also travels extensively I always make sure to plan my surgery knowing he is planning on being in town and seeung oatients at the hospital for the entire week. I think this was obnoxious that Shen did not inform you he would be out during the time you are there especially considering your travel there and that you just had a procedure done by him. I would definitely address this with both his secretary or nurse and him when you see him... [ more ]
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J-Pouch ForumsGeneral Discussion
Insurance Coverage Change
CTBarristerCTBarrister
CeeeeCeeee Suggestion: Ask for the plan's formulary for this year and the coming year to check on which meds are covered and at what cost, if any, to you. Then, if it's not covered, surely there is an appeal process....which will probably require beaucoup paperwork but will be worth it. Good luck! [ more ]
jeane I have anthem high mark ppo and xifaxin was not covered. I do believe it could be based on the employer also as vsl3 was not covered and we appealed it and my husband's company then decided to provide coverage. There is always that option with your doctor's medical note describing a need for a chronic condition. [ more ]
ActiveUC'er I've never had pouchitis drugs, but the most I've ever paid for my prescriptions (Anthem) was the top level (in my case 60, in your case 40). I have had some issues with pre-authorization though. Some drug prescriptions might require your doctor to fill out extra paperwork. [ more ]
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J-Pouch ForumsGeneral Discussion
That's what I'm here for.
Epic ScotsmanEpic Scotsman
little greeny RLC- Unfortunately it is still unknown why these "genes" get turned on (think of it as a light switch getting turned on). Some theories on autoimmune disease point at viruses as being the main trigger that starts our bodies attacking ourselves other theories look at environmental factors or even a combination of factors all working together. Human gene mapping has the potential to prevent all autoimmune disorders, cancers and many genetic diseases. All scientists need to do is find a way to... [ more ]
RLC little greeny - That certainly makes a lot of sense. If we can just work on figuring out the genes and what the triggers are I think there would be more cures for all diseases including cancers. Why do our bodies start to reject? Roberta [ more ]
RLC Thanks you guys for trying! Still at a lost. I have to meet w/surgeon soon to go over all this new information from GI's office. I just haven't made the appt. yet. Tired of seeing doctors. I will make the appt. soon. Roberta [ more ]
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J-Pouch ForumsGeneral Discussion
carbs are killing me
G Guest
fq hi Tom, your recovery sounds similar to mine. I was super SUPER hyper-sensitive to almost every food in the first couple months. it was like my j-pouch was really temperamental, spastic, grumpy, no matter what i ate. there didn't seem to be much rhyme or reason. now 4 months out, i still seem more sensitive than others, for some reason, but my pouch has slowly become accustomed to having food pass through it. but i do still have clustering episodes. i am trying fiber again, but initially... [ more ]
Spooky It seems like you have having far more food intolerances than the norm; sorry you are having such a rough time. At this point, it might be worthwhile for you to try going entirely gluten and lactose free for at least a good week or so, and see if there is any difference. I also think it's a good idea to call your doctor and see if you can't get hooked up with a dietician. You SHOULD be able to eat more foods than this, and fearing foods is never a good thing, so I think you might need a bit... [ more ]
Guest the only thing im eating is toast and cracker and once in a while single grain babyfood rice cereal mixed with almond milk. im back to fearing foods again some including my surgeon said start fiber supplements but they get me gassy and acidy. wheat is so easy and will make eating away from home so much easier but i fear wheat is a culprit. im so disappointed so far but being patient. i must admit when the acidy gassy strained clusters start id rather not be here anymore but the easy days... [ more ]
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J-Pouch ForumsGeneral Discussion
Photo Albums
runner4449runner4449
runner4449 Thanks. I think I'll just hold on to them instead of putting them in a blog in case anyone ever asks to see those type of pictures. Take care! [ more ]
suebear I don't think this site has the bandwidth to support a photo album. Perhaps you can start a blog and provide a link in your signature? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Blending vegetables:Am I eating (drinking) too much fiber??
Mark JMark J
dew Soluble fiber yes, insoluble fiber no. [ more ]
Mark J Thanks for the replies guys. I'll probably start straining some of the fiber out. It seems like fiber would help with watery bm's but I guess too much will also have an adverse effect. Tom my takedown was in 07 [ more ]
skn69 It could be a little too much for now, try deviding 1 smootie into 2 and see if reducing the dosage helps..bean sprouts can be very gassy and so can the mix of veggies...you just have to play with it and measure your results. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Iron Infusions
MicheleRMicheleR
mgmt10 Oh my gosh...so sorry you went thru that! How scary. I am finishing up today a series of 8 iron infusions. Never had any test before hand. Luckily all the infusions went well and I feel a million times better. Hope you can get something figured out to help you. Thanks for letting us know. [ more ]
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J-Pouch ForumsGeneral Discussion
CC update
A akteacher
ActiveUC'er Thanks. It definitely doesn't feel nice, but it seems to be responding to the shots! [ more ]
liz11 jeane have you ever had a defecogram? makes me wonder when you say about emptying your pouch not all the way. and active...sorry to hear about they pyroderma. think those steroid shots must be tough with that. good luck [ more ]
ActiveUC'er And I'll miss you guys by like four days. I have an appt. on the 2nd (steroid shots for my pyoderma). Good luck to both of you! [ more ]
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J-Pouch ForumsGeneral Discussion
normal to cry every night?
G Guest
Rocket I have had my J-Pouch since 1994 and I too have days and nights where I don't sleep very well, similar to you. Every night I get up once to use the bathroom. When the alarm rings to go to work, I have to use the bathroom again. Then shower and eat a light breakfast then use the bathroom again before I leave for work. Prior to going to lunch, I use the bathroom again. After lunch, I use the bathroom 2 more times, the last before I leave to go home. I arrive home, I use the bathroom again, eat... [ more ]
fq Honesty, I'm going to go out on a limb here... You're single right? Nothin' wrong with that. Butttt, to give you a bit of unsolicited advice: if you are interested in attracting a male or female (whatever floats your boat), and keeping that male or female as a friend or otherwise, being a downer 110% of the time is totally UN-sexy, man!! I mean we all have our ups and downs, highs and lows, but people who are CONstantly miserable and whiny and want to drag everyone else down into suffering... [ more ]
RLC chasingtime I am 5-1/2 months out from takedown and you will give it time. That is what you need, right now. Some bodies adjust faster than others. Mine is still adjusting but I am getting out more. I would venture out a little during the day but my nights were terrible like yours. I am still waking up 2 times a night but the pain isn't as bad. The j pouch has to stretch and I think that is the problem for us. Be patient that is all we can do, for now. There is light at the end of this dark... [ more ]
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J-Pouch ForumsGeneral Discussion
levsin medicine
G grandmaof1
vanessavy I took it and Bentyl for months. I don't need them anymore unless my small bowl is moving around to much. Levsin I had far less side effects than Bentyl. But after taking Bentyl for a week I had no side effects. [ more ]
cassiecass Evening' everyone is different when it comes to taking any medications. I have taken both levsin and levebid for years.I was recently prescribed it by my new gastro md..For me THANK YOU LEVSIN Cassiecass [ more ]
CTBarrister I never took levsin until I had a J Pouch and was diagnosed with "spasmodic pouch" or excessive motility shortly after take down. It's an anti-spasmodic. It really helped me with the motility issue although I had side effects which consisted of feeling very loopy and lightheaded. Donnatal is a similar drug that has less side effects IMHO. I can't recall if it was levsin, bentyl or both that I placed under my tongue and allowed to dissolve. I haven't taken it in almost 20 years so I can't recall. [ more ]
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J-Pouch ForumsGeneral Discussion
Iron supplements
Luton MattLuton Matt
Spooky I currently take Life brand ferrous fumerate (generic brand, coated for stomach protection). I was previously taking slow Fe and palafer but those were causing me problems in that I had some upper GI discomfort shortly after taking them. Now, I take my iron at bedtime, as suggested by the pharmacist, and I don't really notice any digestive problems, except for the fact that it quite often turns my stool jet black, which is usually noticeable on my first BM the next morning. [ more ]
dew I've been preaching about this type of iron for ages. Do not take the crap you get from the pharmacy. http://www.albionferrochel.com/ [ more ]
Luton Matt Liquid iron, Okay thanks Suebear. Anything to stop the vicious circle of anaemia vs inflammation! [ more ]
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J-Pouch ForumsGeneral Discussion
Taking steps backward in recovery
fqfq
MarkGregory Have tried self dilation to open things up, or even enemas to help flush things out? I use one of those disposable enema bottles, wash, and refill with tapwater after use. Squeeze entire bottle into pouch, hold it for a little while, and eventually you will get cramping like you need to push, and wala, it is like jet propulsion elimination. [ more ]
RLC fq - I am so with you! I hear your frustration and I am right with you. Everyone here on these posts say "hang in there" so that is what we have to do! Our bodies are not our own and we are not in control! That is what I have found throughout all of this. Remember science is guess and test and we have to just keep guessing and testing! All these suggestions help me out a great deal so I just keep reading and doing what I can! Roberta [ more ]
fq great suggestions...thanks everyone! to be honest i am rather exhausted. i know i need to keep learning and experimenting and trying new things (again....and then AGAIN later in case it didn't work the first time), but i just want to eat and live freely, without thinking about it, or planning around it, or modifying it!!! Not possible with a j-pouch ???? Am I asking for too much ???? i tried metamucil a month ago and found that it irritated and caused more stools, but i think it is a good... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi!
magic30magic30
RLC Magic you are an inspiration to all of us! Congrats! runner4449 keep up the good work! Roberta [ more ]
runner4449 Congratulations! I'm a runner and did 8 marathons before my surgeries this year. I just had my take-down surgery last week, and the surgeon asked me the day after surgery if I had scheduled my next marathon yet. I told him I was going to do the Air Force Marathon in September. He said, "Perfect. We'll be close enough to a year out, we'll do a scope to make sure the pouch still looks good, and I'll run it with you." How cool is my surgeon? Anyhow, hope to join the pre and post colon marathon... [ more ]
JeffDC Way to go, magic. [ more ]
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J-Pouch ForumsGeneral Discussion
ileostomy injury
I itsnotsherry
skn69 itsnotsherry, Just to reassure you, I have had 2 major abdominal traumas in the last 30yrs...first I was run over on a cross walk (yup, I have the darndest luck!)...the guy was going the wrong way on a one way street and hit my right hip( stoma side) and projected me into an oncoming car. My hips took it badly, my stoma did not react. Second time I was agressed in my own apt and they slammed the door numerous times on my abdomen (I was half in/half out the door) and then punched me in the... [ more ]
Blake D. My 3 year old son jumped square on my ileostomy when I had one before takedown. I was scared that I was injured, but nothing happened and I was fine. I imagine if you fall you're probably most likely to injure your wrists or arms so either way, your workplace shouldn't have wires at ankle level anyway. Fall over it and sue the crap out of them, haha! [ more ]
Jan Dollar To be honest, I don't think your stoma is at any greater risk than any other part of your abdomen during a fall. It is all soft belly, and susceptible to blunt trauma. If your stoma actually made you more likely to fall, that might be a factor, but obviously, it is not. If you go up the ladder in reporting and continue to be dismissed, you can file a complaint with your local OSHA office, or online. They will inspect for safety violations, and force correction if needed. Your employer cannot... [ more ]
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J-Pouch ForumsGeneral Discussion
j-pouch vs direct connect
G Guest
fq they are "hollowed out"; there isn't a wall in-between. like this: you have a 10 foot hose and make a vertical slice from one end of the hose just up to the 3 foot mark. you then take the sliced portion, fold it over back on itself and sew it, so it now is like a baggie. Or like this: you take your left sweater sleeve, slice it lengthwise from the elbow to the hand. Do the same thing on the right side. Now sew the left open part to the right open part. not sure if that even made any sense! [ more ]
Guest are our j-pouchs hollowed out as one double wide small intestines or are they folded and sewn that way leaving a wall in between? hope that makes sense. [ more ]
Guest are our j-pouchs hollowed out as one double wide small intestines or are they folded and sewn that way leaving a wall in between? hope that makes sense. [ more ]
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J-Pouch ForumsGeneral Discussion
what help did you need after surgery?
D Danita
Spooky Everyone's recovery is different, so you should plan to have somebody available for at least the first few days that you're home. It also depends on your physical state going into surgery. I had a difficult recovery after my Step 1, but I was critically ill going in, almost died from UC, so I wasn't in very good physical shape to start with. I wasn't very mobile, needed standby assistance for bathing because I was a fall risk, and basically needed somebody around at all times. I also had... [ more ]
Danita Thanks everyone for the replies! It's very helpful to see the wide range of individual needs and recovery trajectories. I guess I'll just have to see how it goes for me, but it's good to know what possibilities to be prepared for. [ more ]
fq i was VERY sick after surgery. needed help with meals, household chores (dishes, laundry, shopping, cleaning), even walking around the block, cuz i got dizzy and nearly passed out. needed help driving for the first few weeks, and also it was nice to have family members accompany me to follow up dr. visits. [ more ]
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J-Pouch ForumsGeneral Discussion
What's going on?
KPKP
liz11 watch out for sugar. And beans... maybe you want to cut those out for awhile and see what happens. good luck. [ more ]
KP I was put on Hyomax (Hyoscyamine) to help with motility and to stop the yellow bile BMs. It worked great for 2 days. I was able to sleep and work in the way that I wish I could every day. Then I ate 3 bean and cheese breakfast burritos and it seems like that ruined everything. It's been 2 weeks since eating the burritos and I'm not passing yellow bile anymore, but my frequency has increased to 15 to 25 BMs a day. I have way more gas now than I did before and I'm not sure what to blame. My... [ more ]
KP I do need to keep a food diary. I guess you include what you eat and how your stools are? That shouldn't be too hard. I did just receive results on a food intolerance test. I have a lot of intolerances, including a severe intolerance to chicken. Not sure about its validity, but I am trying to avoid the 100's of foods it said to. Anyone ever heard of or taken the ALCAT? Is it for real? Donnatal - I will have to remember that. Thanks you guys! I appreciate the info! [ more ]
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J-Pouch ForumsGeneral Discussion
Update on Paleo diet
John95John95
John95 Have to eat poorly to provoke an immune reaction for the blood test! Anything to rationalize it haha [ more ]
skn69 Pumpkin pie and coconut pie with cool whip for breakfast????? I would be in pain too...shhhhhsh...that was just looking for trouble! (I do hope that you enjoyed it before it made you suffer!) Sharon [ more ]
John95 Haha you are absolutely right about sugar. I just had to take advantage and try the two pies I made for a party last weekend. I made the pumpkin pie from a real pumpkin, which tastes way better than pumpkin pie from canned pumpkin. Healthy grains? Isn't that an oxymoron? I know what you're saying though. I will force myself to eat some. They don't even appeal to me anymore. [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal Pain after Surgery
W Wishingwell
Jan Dollar Hopefully, you've seen the surgeon and something has been done, as this seems like an unresolved complication. As to why less surgery was done when the problems were worse than expected...that is because sometimes there are so many adhesions, it is dangerous to try to release them. Jan [ more ]
Subzeromambo Please see another doctor as soon as possible. Even good doctors make some bad decisions and a second opinion could be priceless. [ more ]
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J-Pouch ForumsGeneral Discussion
Crohns in J pouch
S sam01
CTBarrister That is the pouch outlet. My narrowing is at the pouch inlet, which is where stool enters the J Pouch from the ileum. It sounds like he could have cuffitis issues and you may want to discuss that with the Doc as well. [ more ]
sam01 thank you for your input. it's great to know you've been managing with it for quite some time. I am not sure what you mean pouch inlet or outlet. I know that the inflammation he has is at the narrowing where it connects to the rectum. he takes miralax and seems to be able to be able to go. I suspect the extra pushing doesn't help and he bleeds. he does not complain of pain and while he has Crohns symptoms, i'd say the meds are more of his issues. I will take your comments to the doc and ask... [ more ]
CTBarrister Not sure if you mean the pouch inlet or the pouch outlet. I have narrowing at the pouch inlet. I have had pouchitis for 17 years (treated with antibiotics) and inflammation above the pouch which is of uncertain etiology. Crohn's is suspected but the pattern of inflammation is unusual and they are not sure if the pattern does not reflect "fecal stasis", i.e., a pooling of the feces above the pouch inlet due to the severe narrowing of the bowel in that area. I am taking two meds traditionally... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown Scheduled Soon
S SandrineV
SandrineV I will look into bidet. Also,do you take any vitamin supplements. I heard you have to get b12 shots when u don't have a colon. I am not looking forward to a bland diet again. I hope I am able to eat most things. [ more ]
gleam Buy Gas-X. (silly autocorrect) [ more ]
gleam I was in for four days. I stopped taking pain meds in the hospital on day 2.5ish. Do not use baby wipes with witch hazel, that burns my butt. I have found that owning a bidet offsets the need for Calmoseptic ointment and wipes. It will save a lot of money in the long run. Be prepared for a lengthy stay of at least 4 days and then don't expect to want to do anything soon afterward. I still haven't left the house after two weeks, too much urgency. To help with the cramps/spasms/got to go... [ more ]
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J-Pouch ForumsGeneral Discussion
Ongoing Anul Pressure
S Shannah
jeane Do you need to empty your pouch with the pain and pressure? I am not sure if this could just be normal healing or possibly cuffitis or pouchitis. Cuffitis gives me that pressure and pain in the anal area, but it is not dependent on standing or sitting and I do have to empty my pouch to get some relief. I know you are very early out so this could be healing and they may not want to look inside your pouch at this time, but they could view your cuff to see if you may be experiencing cuffitis. [ more ]
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J-Pouch ForumsGeneral Discussion
What is going on!!!!!
ManchesterManchester
Guest I understand where you're coming from Manchester. J Pouches can easily deprive you of sleep, which scientific studies have shown, will leave you depressed. That's just one of many reasons I'm unhappy now, especially with my J Pouch [ more ]
TE Marie Congratulations! If I'd wake up happy and energetic like you did I'd get on my knees and thank God. I've been wondering if I'm going to have to be on antidepressant and anxiety medications forever. I'm also in chronic pain and I take 30-40 lb hydrocodone a day. I'm going to quit worrying about getting "hooked" and get depressed every time I have to talk a pain pill. I'm glad you are doing so well! I only leave the house when I have to and then my husband drives me most of the time. I also... [ more ]
Jan Dollar I'd say you are one lucky dude that you are not a crumpled heap on the floor, going cold turkey like that!! Other than that, perhaps the chronic opiate use was affecting your mood stability. It happens. For most though, a steady diet tends to stabilize, not destabilize. But, we are each individuals with individual responses.... An [ more ]
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J-Pouch ForumsGeneral Discussion
Need to wait for takedown :(
J JessGoguen
SandrineV I have my takedown scheduled this week and I can't wait. However, I have learned to deal with the ileostomy. I was having alot of leaks and was getting extremely frustrated with it. I've been putting the eakin seal around the stoma(powder before) and then the paste on the protective barrier. It seems like overkill, but it works. Haven't had a leak since. Hope this helps. [ more ]
Jeff P. Sorry to hear it. Have you talked to your wound nurse about the leaking? They shouldn't happen and they should be able to help fix it. I tried a few things before realizing that using the putty from the tube worked best for me. Hopefully a better working bag would help you feel better. Don't settle for a bad situation with your bag. Maybe change brands. Hang in there. [ more ]
KiwiPoucher Sorry, forgot to suggest using a belt as well. [ more ]
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J-Pouch ForumsGeneral Discussion
IBD, Jpouch, and IBD related arthritis
A ActiveUC'er
TE Marie shawne, I'm sorry to hear you are having problems. I would think I had no worries if I'd had my pouch as long as you have. I'm assuming you didn't have pouchitis? I speak for my self but wish I'd had the old-time take the entire rectum surgery. I have chronic Cuffitis that is under control but if I quit using the suppositories it comes back. [ more ]
shawne h I had UC in 1985 surgery for j pouch in 1986 three to be exact I had IBD arthritis at this time the j pouch surgery was the old style the rectum was removed no cuff within a few months the arthritis was gone. I am now facing possible Crohns at the least ideopathic IBD the inlet and the pouch is involved am on 20 mg of prednisone so far no real occurance of arthritis just the usual getting old stuff. I think it depends on how much tissue is left from the rectum as to if you face joint issues... [ more ]
Srf1 I had IBD related arthritis myself that had developed over the six months prior to my first surgery in July this year. I didn't realize just how bad it had become until I woke up after surgery and the pain was gone! In a wait and watch mode right now to see if it starts to manifest again... [ more ]
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J-Pouch ForumsGeneral Discussion
Should I get antibiotics from my surgeons office or gastroenterogists?
A asdfqwer
Jan Dollar I get my antibiotics from my GI. Haven't seen my surgeon since 1996, one year post op. If I need a refill and my GI is out of the office, I have my primary doc fill it. I like to keep a supply on hand for travel, and "in case of emergency" so I can start right away if I develop pouchitis symptoms. I don't have chronic pouchitis, but get it once or twice a year, and I never, ever travel without my Flagyl! Jan [ more ]
TE Marie Go to the doctor that is better with your pouch. You could ask your surgeon if she wants you to keep coming to her. There are people on here that have chronic pouchitis and they rotate their antibiotics. You might want to ask a question about that in the Pouchitis forum and search for past postings. [ more ]
asdfqwer mild pouchitis. its not a big deal and i cna live with it but taking a 10 day course of antibiotics can clear it up. having side effects with flagyl though so need to try another one. my weekend binge drinking probably contributes to teh pouchitis though, so stupid of me [ more ]
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J-Pouch ForumsGeneral Discussion
Work/Employment and disclosure
S SarahXYZ
ActiveUC'er You need to get your FMLA paperwork from the company first, then the doctor fills it out. I think each company has their own paperwork - I don't know if there's a standard form. [ more ]
SarahXYZ Thank you all for the info! Esp on the FMLA issue, it would be great to take time off and not have it effect my vacation time as much (just my wallet a little). I am also looking into my health and if there is anything I can do to improve it. The only thing that seems to be out there that I haven't tried is daily antibiotics, which I have dreaded going on in a daily - seems to be not a good idea, but I see others here do take them. Also the pain meds. I will meet with my specialist next week... [ more ]
TE Marie I don't know how much time you are missing. Does your employer have short term and long term disability? It also sounds like you should see your OBGYN. It is good to go to the doctors in case you become disabled. I think I read somewhere 4 times a year. I was approved for social security disability recently. I also have other health issues. It sounds like your problems are escalating so I'm throwing in my 2 cents. Have you been to your OBGYN? Some ladies have problems with the J-pouch and... [ more ]
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J-Pouch ForumsGeneral Discussion
Scheduled take down & vacation
S Shannah
Jeff P. Everyone is different. I was feeling good at 6 weeks and back at work. I would have been fine on the trip and just used the restroom on the plane frequently. Others might feel different. Postponing would work too if you are okay traveling and vacationing with the bag. Good luck! [ more ]
Holly M would you want to consider putting off takedown till after your trip just to be on the safe side? [ more ]
mgmt10 The odds are in your favor that you will be fine but it's good to be prepared. Like Kathy suggested, trip insurance would be a great idea. And yes of course if you do purchase it, all will be fine! I could have gone on vacation no problem 6 weeks after takedown. [ more ]
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J-Pouch ForumsGeneral Discussion
Therapeutic Massage
N new2thisstuff
cassiecass HI I am also from NY.I have also thinking of this also .I have read over at ST Luke's Roosevelt and Cornell they have programs for people with our type of surgery.I would definately have approval by my Dctor prior to trying this. Cassiecass [ more ]
new2thisstuff Thanks for the replies. That is great news Jeff! [ more ]
Jeff1959 After a series of obstructions eight months ago, I started to see a physical therapist who specializes in a technique that breaks up scar tissue. This required a doctors prescription and I have not had any obstructions since. [ more ]
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J-Pouch ForumsGeneral Discussion
Farting with a j-pouch
E EricP
bootstrap Haha! Thanks, Kiwi, that is good to know!! [ more ]
KiwiPoucher Bootstrap....yes it is very similar to when you have loads of UC mucus, you have to try and will know just before the abort option is no longer available!!! The difference for me is that since I have had my J-Pouch there have been no instances when there is absolutely no abort option once the process has started.....full control....YAY!!! [ more ]
bootstrap When I had UC it took a couple years to learn to differentiate between the subtle sensations of whether it was just gas or whether something other than gas might come out. I wonder if going through this process once already with UC will help me to already have some of this skill down for after I have my take-down? Or is it all just completely different since the plumbing down there is different equipment? Can anyone else make this comparison?? [ more ]
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J-Pouch ForumsGeneral Discussion
Post Takedown Blues
G gleam
TE Marie I don't think your doctor will clear you back for work so soon. When people have other abdominal surgeries, like hysterectomies, they usually have 6 weeks off. I think for a physical job you probably need at least 3 months. According to my LTD company it was 3 months. I highly recommend the abdominal wrap. I ended up with a surgery 6 months after take down for an incisional hernia. I hope you are feeling better soon. [ more ]
skn69 Gleam, I second what Blake says about the hernia belt...climbing poles that soon is really taking risks...not like you have a desk job where you can take rests and run to the nearest bathroom...you are litterally stuck up a pole if you need to run...courageous aren't you? Whatever you do or decide to do, please take every precaution to protect your pouch, abdomen and clothing (now might be a good time to check out some of the protective undergarments availible...for those 'just in case'... [ more ]
Blake D. Things definately get better. Interesting way of putting it, trying to pass gas but it feels like a balloon is in the way. That's exactly what I felt, those gas pains went away slowly, got better with time. I'm only about 8 weeks out. I feel great. Go to the bathroom about 6 to 8 times a day, 1 to 3 times a night. Its pretty easy to hold it in until I get to the bathroom. Going back to work in your field only after 18 days sounds too soon. I think you could do it if you have no other option,... [ more ]
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J-Pouch ForumsGeneral Discussion
Me, my meds or menopause?
skn69skn69
skn69 Laurie, I got the book thrown at me at birth...my mom took dystelebene while pregnant with me...that along with my 'heriditary genetic' problems left me with d'Heler's-Danlos syndrom( a chronic collagene deficiency that means that I just don't heal properly= my sutures don't hold and nobody wanted to belive it), congenital deformities in the whole digestive tract, reproductive organs, heart and epilepsy...not fun at all. Every time that they cut me open I end up needing 6 more surgeries to... [ more ]
Laurie49 Ha ha -- I promise that you'll find so many of us are Type A's. I think it should be listed as a precurser for IBD. Keep us posted as to what they find out, Sharon. I didn't know you had Epilepsy as well. Damn girl! [ more ]
RLC Laurie type A personality for sure! I have had to really adapt to this new life, for sure! I don't sweat the small stuff anymore! Roberta [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
digestive enzymes
Holly MHolly M
Holly M thanks Sarah, I will check into this! I hope you are doing well. [ more ]
Inflamed&Untamed Hey Holly! I use a powder that you mix with water called Fruitein. It's got digestive enzymes and whole foods in it. I love it! [ more ]
Holly M Thanks for the responses!! I do take VSL#3 Double Strength every day. And I am really avoiding all the foods I know will cause gas. Of course sometimes I don't know it will till after, then it goes on the naughty list! I also think time is a great healer, doc said I still have another 6mths of healing ahead of me. So I need to pack my patience and enjoy life (which I am)! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Botox
V vstRN
Goody2shoes Have you used lignocaine gel? or the stuff for angina (nitroglycerine? gel) the latter gave me a pounding headache (so use less!!!) but there is one manufactured specifically for the anal area I have used both in the past for fissures and both worked really well [ more ]
vstRN Thank you Jan. I'm STILL dealing with this fissure. It isn't nearly as painful as it was but it kind of waxes and wanes. I'm thinking I'll probably call my surgeon tomorrow, see what he says and probably end up just going for the botox. [ more ]
Jan Dollar There really isn't any recovery time associated with the Botox injetions themselves, but you can have incontinence from the sphincter paralysis it causes, so that could put a damper on your return to work. It can take 3 months for thr Botox to wear off. Anal fissures can take a long time to heal. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
coco 8035r hybrid bidet
G gleam
gleam The battery is replaceable and although it sits in a proprietary housing you can just replace it with a regular Lithium-Ion battery found on ebay for less than $10 if it were to die. This unit does not have a filter, it has a mesh screen that may become clogged over time but easily cleaned out. The toilet seat is odd and I'm not 100% keen on the way it positions us men further toward the front of the toilet. Again, this is my first impressions. More info later. =) [ more ]
gleam Received and installed! First impressions, very easy installation, the box had everything I needed for the install except for a pair of pliers. HOLY COW! Who pointed a pressure washer at my rear end?! I think this is going to take some time getting used to. I am initially regretting not getting the version that warms the water but I live in South Florida, it can't be that bad in the Winter? LOL [ more ]
TE Marie I hear you Kathy...I thought it was a cute post when gleem started this thread. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
What do you write when asked....
J Jpouch8888
Laurie49 Colectomy/J-Pouch due to ulcerative colitis. Then we always have a discussion about it. [ more ]
CTBarrister I write that, and also pouchitis/ileitis, since it applies in my case. [ more ]
Spooky I usually write: ileo-anal anastamosis (j-pouch) secondary to Ulcerative Colitis. Then I tick all the boxes (you know the ones that say "do you currently have or have ever had...) about blood transfusions, anemia, surgeries, steroids, arrhythmia, hospitalizations, etc, etc, etc, and then I usually put a big bracket saying "re: Ulcerative colitis." Depending on the specific form, sometimes I tick so many boxes, I can only laugh about it. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
ready to start looking for work
N NJK
ISeeUC NJK- If you're worried about being continent at work, you may want to consider wearing incontinence pads until you're comfortable with how your pouch handles your work environment. [ more ]
Onwisconsin Hey, I work as a teacher. You can't leave the room often in the middle of class. I usually have to run to the bathroom between classes, a prep hour, or a work-time once in the morning, but sometimes I make it to lunch. And once in the afternoon, though sometimes I make it to 2:55. So long as you have waking continence (im still working on the sleeping part) you can do any job. Even a job with meeting is doable if your frequency is down, just stop off in the bathroom before the meeting. I... [ more ]
tenaciousC I just reached my 4 year mark post takedown and debating a job change. I find myself fearing some positions that my pouch could interfere with and choose not to apply. I need to get past that. Anyway, my current jobs (I have two) work well with my j-pouch schedule, but I need a change for different reasons. In any case, I chose to notify my employer and/or coworkers of my situation when it becomes necessary. If I am having a rough patch and they notice my frequent BM trips, then I clue them... [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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